At the beginning of cognitive slipping

Pel

I am appreciating reading the threads about all of the experiences I may soon be facing.  After a year or two of noticing my SO having cognitive difficulties with remembering names of objects, people, and the historical research (that he was so good with as a professional sideline), to his continued employment difficulties as an environmental engineering consultant.  When the pandemic retired him and me to working from home on our laptops (I too work professionally as a museum professional and historian), I began noticing his frustration with simple technology and saw his company attempts to try to persuade him to retire at 79. He was forced out in August of this year.  I continue to work at 71 and am afraid to think about retiring as I love my work and realize that I need to continue psychologically for my own health.  

When he experienced a T.I.A. at the breakfast table in January, his situation has been accelerated and it appears he had been experiencing mini-strokes all along affecting his cognitive health.  I have an appointment with a neurological psychologist for testing in a month and a half and am hoping they will find a cancellation spot for us sooner. In the meanwhile, he has had carotid arterial surgery and much other medical business to attend to.  I am diagnosed with managed Rheumatoid Arthritis and recently had a third brain tumor (benign meningioma) removed by gamma knife radiation (two previously removed with major cranial surgery).  I have support of his locally living daughter but she is involved with homeschooling her last child of four and working outside of the home part-time, so much is on my shoulders now as the in-home caretaker.  He is unable to do much domestically, although is still driving locally and insistent on continuing to use his farm equipment and keeping up our rural homestead needs (somewhat!).  

My biggest accomplishment so far (other than the medical interventions) has been to start removing the feral cat herd of a dozen or so) that we had been working with for the last year and a half.  We had been slowly having them neutered and vaccinated, but ran into feline infectious leukemia with a couple that hindered our progress for a while. We have six pet cats and an old dog who we keep inside at night and well vaccinated, etc.   Although our local animal shelter is over crowded (no kill facility), the director has located a friendly farm situation where an owner feeds and cares for other TNR (trap-neuter-release) animals.  We are in the process of having the last 4 or 5 trapped and taken care of.  This had become an obsession of my SO since our favorite pet cat had been killed on the road in front of our rural home...not too far from where his wife in 1978 was fatally hit in front of him and her children.  They had experienced an automotive breakdown on the return trip from our town and were all in the car while their dad worked under the hood of the car beside the road. She walked around the road side of the car to retrieve a screwdriver from the trunk and was sideswiped.  Needless to say, his mental state was severely shaken when our cat was hit last fall, and he has been fantasizing about selling all of his rural property to move back to the hometown 70 miles from here where he grew up.  Up until the T.I.A. he had been driving there to try to find a remote farmhouse where he could take all our cats and build protective fencing to start over in a new life.  Dealing with reality and his logic decline has been very taxing.  I have held my ground that I would not move away, but am also working on renovating my own farmhouse which is located across county about 17 miles away.  I know I will need to have this ready in case things go south quickly.

Thanks to all of your sharing and advising on this site.  I will attempt to keep updating our pathway.  Attached is a shot of Val and our beloved Bo Bo (RIP).

Joydean

Pel, hi and welcome! I don’t have any information to share at this time. I can tell you you have come to the best place for knowledgeable people to help you. Each person with dementia/Alzheimer’s is different and each one of us will have different journeys. Yet so much is alike. Many will be on at different times and offer advice and they are a very knowledgeable group. Honestly I don’t know how I could have made this far with out them. I have learned more from this group than all the books I have read and even from all the doctors we see. 

Wishing all the best to you and your husband. 

jmlarue

Welcome, Pel. You've come to a good place to find information and support on this difficult journey. We have some things in common. I am also 71 and am managing rheumatoid arthritis. My mobility sucks, but the chronic pain is bearable with meds. Both hips need replacing, but I cannot consider surgery and a long rehab so long as I am the sole caregiver of my DH. Like your SO, my guy has vascular dementia. Same cause - chronic TIA's and one serious stroke with the cumulative effect of late stage dementia now. His mother had ALZ, so I was at least familiar with some of the issues regarding caregiving for a person with dementia. I was better prepared to deal with my husband's cognitive decline in the early stages, but not prepared for the speed at which that decline would be in the case of vascular dementia. The thing you will probably notice (if you haven't already) is that you SO will experience quick changes in his cognitive status as the TIA's continue. Unlike being on a slow decline down a ramp (as with ALZ), my DH can wake up tomorrow and it's like he's fallen off a little cliff. My MIL declined over 12 years to end stage. My DH has only had 6 years to late stage dementia. At this pace, I really don't expect him to survive more than another year, assuming that he's fortunate not to suffer another major stroke that takes him sooner.

There is only one thing in your intro information that gives me pause - the fact that your SO is still driving. Even though you may think that he's able to do so safely today. Tomorrow (after another TIA) he may be a serious danger to himself and others. Stopping my DH from driving was the most horrendous ordeal I've  had to face so far, but it had to be done. I beg you to be vigilant in assessing his driving ability daily and finding the steel backbone to take the keys away when you must. 

Don't neglect the importance of taking care of yourself.

toolbeltexpert

Welcome here Pel my experiences with cognitive decline are not the same,but have always had a cat or 10, we have all but the last one to walk up neutered. We have 16 acres and on the county line. You'll  find lots of help here and meet some folks who know exactly what you're going thru.

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Pel

Thanks for everyone's input here.  There are so many long posts and answers that I haven't had time to roll out and read, but plan to keep finding free moments to learn more.  My boyfriend's four children got together this summer and got him to set up a trust for his farm landholdings.  He is still able to transact business, lease to hunters, sell timber harvests, etc., but as he has a substantial debt to agricultural banks, they are involved in overseeing him make financial decisions since he is presently on a "castles in the sky" trip to sell all his local property and purchase a hideaway farmhouse in the area where he grew up.  He had been driving the 75 miles visiting old friends and farmers until he had the first detectable TIA on Jan. 10.  I was able to get an ambulance within 10 minutes and he was taken to the nearest large town stroke clinic 40 minutes from here.  After he had been prodded and poked for about 20 hours and his daughter was in the room, he went AWOL and escaped the hospital after insulting and threatening the medical personnel.  They told him that he had a 90+% carotid artery blockage on one side and they had scheduled him for surgery in the next two days, but that he would have to stay in the hospital until then.  After his children came to my rescue in the following days and persuaded him about his danger, it was another week and a half before the surgery could be rescheduled.  It was completely successful, but the surgeon said that tests showed his cognitive issues were related to hidden events of ministrokes before then.  His daughter removed his truck keys and the farm tractor was in the shop, so they helped me to keep him distracted to stay close to home until and for a while after the surgery was successfully performed.  As 3 of the 4 children live distances away, I have relied on the daughter living 15 miles from here who has the DPOA and has swapped off with me doctor's office transportation, medical supplies pickup, etc., so that both of us can continue to work, etc.  My SO has a difficult personality and addressing his driving has been a worrisome concern.  The surgeon told him at the post surgical checkup last month that, as far as the surgery goes, he can drive.  But this unfortunately is what allowed my LO to return to  modified distance driving (nearest town is 12 miles on rural roads).  I sometimes feel that the 3 kids could do more to at least telephone their dad more often if they can't arrange to visit.  He just needs the diversion of conversation with someone since I go to work late morning each day and don't get home until 6.  I keep sending emails and text messages begging them for their input... just an email response to my questions and comments, if they would! It is almost as if they are too busy to have a conversation with me.  I will soon start remodeling my farm house and will, at some point, start moving some of my antique furniture to the finished house.  I hope they will... then... see that they may need to look down the road at the eventuality of either hiring a paid caretaker or other situations.  I love him and want to be loyal to a man with whom I've invested so much of my life, but he also angrily insults me and refuses to listen to me.  I know that I must take care of myself first.  For the first time in the last couple of weeks, I have had stress related blood pressure issues, something I never had before, even with the occasional RA flareups that seem to knock me off my feet for a while. I telehealth visit with a psychologist/counselor weekly and am trying to work in several weekly hour walks in the dark on a safe nearby forest trail with my headlamp.  Contact with nature and the walking are part of my self-nurturing that I struggle to find enough time to do.  As the last of the feral cat herd are removed, I look forward to the little more time after work when I don't feel I have to run a race to beat the sun's going down to get all done.

Pel

Thanks for your comments.  It appears we do have lots of commonalities.  Since my last reading on this forum, I got him to an eye exam which he hadn't had in many years.   Doc told him his cataracts were pretty bad, so his daughter and I have been weighing on him to go ahead with the surgery which I just had to cancel for in two weeks (his refusal).  We are trying to maneuver him since we reminded him he may get caught driving and lose his license.  Trying to get a reset on the surgeries in the next month.  WE just got a clean bill of health on the artery surgery and his right carotid arteries (after the obvious TIA found to be 90+% blocked) are now clean as a whistle. Has 40% block on the left side which the doc says they'll reevaluate in a year.  Some of my difficulties are that none of the other 3 children have comprehended that their input is soooo needed.  I have emailed and texted them that just a cheery phone call every now and again could go so far to help when he is stuck in a mood or obsessing over a poorly conceived plan to execute a farming project. They don't bother to acknowledge my correspondences.  They are all smiles and support when they are here for an occasional visit...and two daughters did a grand weekend job after Christmas of helping by cleaning out their dad's boxes and tubs of collections, publications, family items.  The daughter close by has arranged for the legal proceedings to set up his farm lands in a trust for his grandchildren, so has the power of attorney.  She is handling his medical bills and supplemental insurance policies.  The others live in other towns and states and are so busy with their own jobs and families that they don't seem to want to acknowledge that I am just the unpaid live-in caretaker in most respects and that I would appreciate some attempts to collaborate on his affairs. I get sooo lonely at times, just would appreciate an acknowledgement of my efforts.  He and I never married and have been together 15 years now.  I have my own house 15 miles from here on which I am having some renovations done, so am projecting my energies towards planning that project as a place where I will eventually go if things go drastically downhill here.

I have a testing appointment set up at the end of May with a psychologist/neurologist.  I am begging the children to please help keep him on track and help me persuade him not to jump ship on it.  I feel like a practicing magician trying to remember the magic words to make things happen like they should.

 I read where one man said that his wife snapped at him when he broached a topic...that she considered him as attacking her or arguing with her when he was just going to make a suggestion or create conversation.  Often I have to deal with that also.  His irrational anger makes him so quick to call me names and threaten to throw me out.  

Will revisit this forum later this weekend when I have some more time.

Gig Harbor

Maybe let his children know that they have a choice. They can become involved in his care now and help you care for him or at some point he will end up at one of their homes. Since you aren’t married they will probably end up assuming his care. They need to have input on what to choose when he needs to move to memory care. They need to understand that you will not remain an unpaid caregiver for years and jeopardize your own health.

ElaineD

Dear Pel,

Welcome!  I also have a SO (husband, in my case) in the early stage of what I'm sure is vascular dementia (runs in his family).

He will be 83 in May, and still operates pretty independently.  He makes wooden puzzles and other wood things in a small workshop in our Independent Living facility.   And he goes to play golf, by himself, at a par 3 course nearby.

He is very helpful to other residents, driving them to the nearby hospital (less than 2 miles).  He is very well liked here, and I'm so glad he can help others because he really enjoys that.

He drives, but only very familiar routes and he also takes me to my many medical appointments.

He has had NO testing, although I've repeatedly messaged our Primary Care Physician that he continues a slow decline in memory.  I would think some baseline testing would be easy (the simple MMSE, for example)....but so far there is no indication that she has administered that.

Because his older sister (by 11 years) died in Memory Care last year from vascular dementia, and his mother also had VD, I'm quite sure that is his problem.

I will insist on intervention with his driving as soon as I have any indication that he is a danger to himself or others.  But I haven't seen anything yet.  And of course accidents CAN happen, regardless of cognitive ability.

We don't have property to deal with, and we've been married 60 years in July so our family is settled and our wills, Advanced Directives, Durable Power of Attorney forms, etc. are taken care of.

I've also arranged our burial plot with grave monument in place. And I've arranged for our cremations with ashes sent to the cemetery.  Everything is paid for and all the documentation is easy to find in the filing  cabinet.

Once my husband needs help with activities of daily life (transferring, toileting, feeding, dressing and bathing)I will not be able to help him.  He is MY caretaker since I'm severely disabled).   He will move into Assisted Living, and I will probably have to move there with him, to get the help I need.

We do have Long Term Care Insurance, that pays out $4,000/mo for 6 years, for each of us.

So now it is just a day at a time.......

Regards, elained

Rescue mom

Elaine, this is such a coincidence, something me think of you earlier today, and I was thinking (hard work!) we had not heard from you in a while. Good to see an update,although sorry you have to be here.

I have to say (coincidence atop coincidence)  my DH with Alzheimer’s had some problems;  others said we all forget things, or he doesn’t feel well, etc. I disagreed, but….

Until the cops called me, he was found a mile away, on a route he travelled for decades, (to his own doctors office) driving so badly/erratically he was involved in an accident and did not know where he was or where he was going, etc.  Turns out it wasn’t the first incident, although I knew nothing of those.

That, and some money issues, in the same week, finally convinced his PCP to refer to memory clinic..Dx midstage Alzheimer’s. 

Anyway, I know you’ve heard about all this already…please take care of yourself. I know you depend on him for so much.

Peel, please please re-read Gig Harbors comments, especially. Many times family is fine with others doing unpaid caregiver work. This can be terribly hard, you may sacrifice a lot, but others don’t always see that (or want to see it, and definitely not deal with it).

Pel

Rescue Mom and Gig Harbor, your comments have been very very helpful, as have the stories others have contributed to my comments/post.  I needed the words defined on my dealings with the children of my LO.  I have been texting, leaving voice mails, and emailing just to try to get some feedback.  I believe my next step is to put together a written letter alerting them to the fact that I cannot go on doing this as a free caretaker without their more regular assistance.  They need to understand that if my health fails or if he becomes unmanageable, they will need to take over...however.  My health is becoming an increasing problem and  I am finding myself forgetting and losing grips on my own mental functionalities, knowing that the lack of sleep and other stressing factors are at the root.

Bob in LW

Pel wrote:

  Since my last reading on this forum, I got him to an eye exam which he hadn't had in many years.   Doc told him his cataracts were pretty bad, so his daughter and I have been weighing on him to go ahead with the surgery which I just had to cancel for in two weeks (his refusal).  

I hope that you can convince him to go ahead with the cataract surgery, since it is an outpatient procedure and quite routine. He doesn't know bad his vision is because it deteriorated over a long period of time but will be amazed at the results.

Good Luck!

Rescue mom

Pel (sorry my autocorrect wants to say something different), I am going to be very blunt. I’ve been involved in this forum for 3-4 years, and real-life support groups for almost a year since Covid, and before covid. The stories of kids and other family who disappear when dementia arises, are sadly many. There’s a thread here now from Bill titled ”I’m Fine” talking about some of that.

Caregiving is hard work. Many people, including family, are happy to let someone else take over. Everybody is busy—everybody. Nobody wants to deal with this. But it happens, and family has to step up. As a non-married “friend,” (as I read it, maybe I missed something)  you could end up sacrificing everything—your own health, your financial future, your life—and be left with nothing. We do this for people we love, but you are in a very precarious situation with no legal protections or considerations. 

His family could kick you to the curb at any time with no consideration. They may not, since you’re doing all the work now. But they can; their wishes will be paramont legally, and if you are not married, you have no leg to stand on. 

You need to take a stand for yourself. But please keep in mind that the kids may be fine to let you handle it as long as you will, or can. Do you think they’ll be concerned about *your* needs, when they’re not even helping with their own father? Yes, everybody here is “busy” no it’s not fair, but it happens and we have to deal with it, especially when it’s family.

Pel

I am back in the loop here. My schedule is so busy, that I have little time to sit down and join the conversations.  I am sleep deprived but attempting to keep somewhat regular sleep hours and as being recently diagnosed with sleep apnea, use my CPAP machine regularly.  Still trying to keep my stimulating 22 year career as a museum director afloat as I fear being without it.  I am 72 and have had a varied life of creativity and success in my various careers as an illustrator/fine artist, art teacher, and being involved in environmental issues in my community.  I zoom meet with my wonderful psychologist twice a month and try to keep my rheumatoid arthritis controlled with meds and with somewhat regular hikes in the woods (not enough time for it lately as everything has been in rapid movement)                                                             My SO finally went through cataract surgery on Tuesday (and loves the results) and neurological/psychological testing on Wednesday. He had eaten something from the refrigerator while I was out of the room as we were getting ready for the early morning cataract surgery on the previous week, but the doctor was able to reschedule the following week. He had sabotaged the neuro/psych testing back in March by refusing to go, but I was able to get reset with the appointment on May 25.  The professional is recommended as the best around and it was intense experience for him, me, and his POA daughter.  The best was the bonding I was able to strengthen with his daughter.  I was able to find out that she, and her non-responsive siblings all suffer from differing issues such as dyslexia, mild autism, etc.  Now I understand why I am getting no response from my emails, text messages, etc...not that I excuse them for not taking responsibility.  They are all very intelligent teachers but have apparently the gene that comes from their father....something the psychologist points out....and the daughter reacted to with concern.  The doctor said that his Jan. TIA was more damaging than the emergency room studies first revealed to us.  However, in communicating with me and his daughter about her father's narcissistic behaviors and irrational anger issues,  she suspect he may have a form of Bipolar that often times highly intelligent people are able to mask. Having grown up in a large family with dysfunction stemmed through my mother's long-undiagnosed classic manic depression, I am able to relate so much more wearing this new pair of glasses.  As the sandwich daughter and  a problem solver, I now am tying up my questions about why I have stayed in this relationship as long as I have (15 years) after a devastating divorce from my husband of 17 years with two children.

Pel

Continuing this long diatribe...    So it will be several weeks before we get the results of the testing.  He is still driving but the doc is going to have our GP require him to go for driving evaluation.  His wild castle in the sky plan to sell everything and move to his childhood hometown has moderated and he has been spending a lot of time going through his old scrapbooks, published works, artifact collections, and tubs of things he had stashed away out of sight for 35 or 40 years.  His long-term memory is in high gear and he is staying busy working on his farm and trying to complete long-abandoned projects.  He's having lots of trouble with his tractors and lawn mower as he has put the wrong fuels in tanks and keeps breaking things that he is incompetent to fix anymore.  I am having to learn to do a lot of things to keep the household together that most people over the years have shared responsibility for.  

All his symptoms point to vascular dementia types of decline, but the doctor has given us hope that there are new meds that can be helpful in the short run.  She will be consulting with his other neurologist and thinks she can replace the depakote we have been using (also memantine and donepezil which she said are good) with a new med to help with the anxiety and emotional outbursts.  

Hard to go into all the detail I am taking in, but I have a contractor now beginning work on the repairs and bathroom renovations needed on my farmhouse where I raised my family.  As my SO's path moves on, I will continue to move my father's antique furniture slowly back into my house.  It will be ready for me when the time comes. 

Also, the overpopulated animal shelter was able to help me trap and neuter the 11 feral cats and placed them on a haven farm where they will be allowed to remain feral in a very rural farm place with a caretaking land owner.  Not having to worry about the extra routines and expenses has been a great relief.  We still have six and an old dog with dementia living with us, but it is wonderful to see how much they contribute to my SO's mental and emotional state.

I do not plan to desert him, but know things could go south at any point, and I have tried to warn the children that they may be taking more care of him in the future.  That is still a shaky part of my life right now...trying to get them to wake up and realize this.  The POA daughter and I talked a lot this week about this and the need to go the next step with getting the estate issues signed off.  She has a huge load to try to do all of this without much help from her siblings, but it is an ongoing discussion and my professional helpers have given me information along the way that I can share with her.

Enough for the moment...this writing is exhausting, but a cathartic release I needed.  Now, back to work.